New here. Finding my way round

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Lelesmummy

Hi. I'm Lelesmummy. I'm also Jamie's mummy Martin's mummy and squishys mummy ??
I am mum to 4 boys. 3 of them are diagnosed with a rare chromosome deletion. 2 of those are diagnosed adhd and autistic and 1 is awaiting tests but he is selective mute and without question autistic and adhd also.
They inherit their chromosome deletion from me. I didn't know I had it u till my lele was tested and then I was too. So far there are only 20 cases in the world like ours. We are only missing a tiny amount from chromosome 15 but it's enough to make life very interesting.
My oldest son is 16 and he sees it as we have evolved quicker than the other more mortals on this earth. Hes aspergers so we allow him that thought ??
Joking aside though. It's very hard work. My husband works 43 hours a week. We do the best we can as a family but it's hard going and exhausting some days.
The hardest part is getting people to understand. Teachers, drs, even family will say "what does it actually mean though?" Our honest answer is we don't know. My optician last week asked me what the chromosome deletion meant for sight. I couldn't tell him, theres only 20 people world wide so no data to use. It's all guess work.
Its exhausting and frightening and sometimes very lonely. Theres lots of things we don't talk about. Like the higher cancer rates in those 20 people. Or the possible heart defect that almost all have had. 
Last month my littlest guy had some routine bloods done. The results came back within a few hours. He ended up on a ward having more tests within only a few hours of the dr ringing me and telling me this isn't a joke nor a false alarm and he needs to be brought to emergency care. Turned out he had no platelets or something and they all assumed leukaemia. Thank God it was a false positive test. But that's kind of what our life is like. Lots of guessing and worrying and then lots of just normal madness.
Sorry I'm rambling now. Just hope that I can find some support and offer some to others here.
Thanks for reading.x

CockneyRebel

Hi @Lelesmummy and welcome

Not sure what support we can give you but we are always here for a chat or to listen to a rant if that helps